Evaluation of long-term complaints and problems on medical, surgical, psychological, social-emotional, conditional and motoric area in patients with one or multiple congenital malformations. More knowledge on long-term morbidity will lead to better…
ID
Source
Brief title
Condition
- Gastrointestinal tract disorders congenital
- Anal and rectal conditions NEC
- Congenital respiratory tract disorders
Synonym
Research involving
Sponsors and support
Intervention
Outcome measures
Primary outcome
For each diagnosis assessment of :
Medical problems
Psychological functioning
Condition, motorical abilities, strenght, mobility
Quality of life, experience of illness
Social and environmental functioning (school, profession)
Secondary outcome
The amount of patients who still have complaints at the age of 18 years and
need to be transferred to the adult health care
Background summary
In the Netherlands each year 5000 children with a severe congenital, anatomical
malformations are born. Congenital malformations with persistant physical
handicaps and multiple hospital admissions influence a childs growth and
development. Quality of life of parents and child can also be influenced. Since
2000 the physical and mental development of children with congenital
malformations until the age of 12 years is monitored in a follow-up programme.
Problems can be recognised at an early stage and support and/or intervention
can be rapidly initialized. More and more it is being recognised that many
adolescent patients still have physical and mental problems. At this age
questions about inheritance can start to play a larger role. To evaluate
possible problems in this group of patients, follow-up should be extended to
the age of 18 years. At this age, adequate transfer to the adult health care
can be supported.
Study objective
Evaluation of long-term complaints and problems on medical, surgical,
psychological, social-emotional, conditional and motoric area in patients with
one or multiple congenital malformations. More knowledge on long-term morbidity
will lead to better information of parents and children in the future. When a
patient has complaints and/or problems, information and advise can be given
and, if necessary, rapid intervention can take place.
In case of questions on inheritance, an appointment with the clinical genetic
will be offered.
At the age of 18 year the patient will be adequately transferred to the adult
health care.
Study design
It concerns a prospective longitudinal cohort study.
Study burden and risks
Burden:
In the current follow-up programme children at 5 and 8 years of age are tested
according to an adjusted for their age, but similar schedule. The medical,
psychological and motoric examination are considered to be intensive but also
fun.
Most parents consider filling out the forms and a full day in the hospital as
an considerable time investment. Despite this fact however, most parents are
motivated to attend the full programme.
Risk:
There is no risk expected for patients and/or parents from participation in
this study
Dr. Molewaterplein 60
3015 GJ Rotterdam
NL
Dr. Molewaterplein 60
3015 GJ Rotterdam
NL
Listed location countries
Age
Inclusion criteria
Patients born between 1988 and 2000 who were treated in the Sophia Children's hospital with a congenital diaphragmatic hernia, CCAML, esophageal atresia, intestinal atresia, abdominal wall defect, M. Hirschsprung, anorectal malformation and sacrococcygeal teratoma
Exclusion criteria
Lacking parental and/or patients informed consent
Design
Recruitment
Followed up by the following (possibly more current) registration
No registrations found.
Other (possibly less up-to-date) registrations in this register
No registrations found.
In other registers
| Register | ID |
|---|---|
| CCMO | NL14954.078.07 |